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mom2two
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/20/2010 6:17 PM (GMT -6)   
Hi<
 
I am new to this forum.  I have no diagnosis but have been sick for over ten years.  I have been getting progressively worse for the past two years, but with brief moments where I feel somewhat better.
 
I am looking for help and recommendations.  I was diagnosed with interstitial cystitis, endometriosis, and fibromyalgia.
 
I have chronic fatigue, chronic pain, left chest pain, like someone is squeezing me to death.  I get frequent headaches, have blurred vision, and difficulty with speach and memory.  At times I feel like I am having some sort of seizure as my vision will bounce up and down rapidly, but I am not shaking.  I also get numbness in my face and extremities, and rarely have had severe pain on my face by the cheek.
 
All of these symptoms wax and wane.  What is most disturbing to me is the fact that I have become clumsy and fall and have difficulty walking, and I cant seem to get my words out right and think right.  I get confused very easily.  I know that I am a smart person, but its not appearing that way anymore.  I have difficulty doing the job that I have been doing for the last 15 years, because of physical and cognitive reasons.
 
I have seen the doctor many times last two years.  I quit going eventually because the doctor says "thats fibromyalgia and IBS for you"  and I just got tired of trying.
 
Based on what you know, what kind of doctor should I see.  I was just seeing my family dr, not a specialist.
 
Thanks for any info!!

Jan4you
New Member


Date Joined Apr 2010
Total Posts : 19
   Posted 5/20/2010 6:27 PM (GMT -6)   
WOW sorry for all you are going through.. I bet you're getting a bit scared eh?
 
What kind of doc would make those comments from YOUR symptoms?
 
HAve you had a NEURO exam? A MRI?? ASK for that..and get to an MS neuro
 
Let us know how you're doing
 
Warmly, Jan
I believe in MIRACLES ~!
 
DX: 02/10 MS and Epillepsy
DX: 10/09 Gitelmans disorder, a rare kidney disease
DX: 02/09 Dysautonomia and SICCA syndrome


mom2two
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/20/2010 6:51 PM (GMT -6)   
Thanks for a quick reply Jan! I have not seen a neurologist, so I am g oing to try to make an appointment with one here without going through my doc. Im not scarred anymore, just extremely sick of feeling like this without really getting a good answer! Thanks for the advice.

Jan4you
New Member


Date Joined Apr 2010
Total Posts : 19
   Posted 5/20/2010 6:58 PM (GMT -6)   
YEAH.. now..get an MRI you PCP can order.. or maybe the MS neurologist. Be prepared neurologist dont specialize in MS..and can be good or misleading.
 
Dont know where you live..but see if you can get an appt with a MS neurologist too.
 
Keep in touch my dear  HUGS
Jan
I believe in MIRACLES ~!
 
DX: 02/10 MS and Epillepsy
DX: 10/09 Gitelmans disorder, a rare kidney disease
DX: 02/09 Dysautonomia and SICCA syndrome


Jan4you
New Member


Date Joined Apr 2010
Total Posts : 19
   Posted 5/20/2010 7:05 PM (GMT -6)   
Oh..forgot..hehehee..
 
Do you get that squeezing pain around your rib cage? That is where I get mine..my worse symptom.
 
Where's your pain? You have many symptoms that definitely something is wrong...so hang in there.
 
What do you take for our pain? Endometriosis is painful..
and fibro was diagnosed by whom?? They told me I had it..looked likt I did..but didn't..by 2 Rheumies.
 
It gets complex. Presently I am off work on disability with a so called MS diagnosis and Seizures along with 3 other problems..all diagnosed in last year.
 
I am about to see a MS specialist (used to see one..after 4 years said it was NOT MS) so I am not holding my breath.
 
I have blurry vision and eye pain.
 
You have face pain too..have you looked up MS symptoms?
 
Just know that you can have more than 1 diagnosis..and it can change. Lesions on the brain.. the right kind for MS along with a positive LP and you have a diagnosis for sure.
 
ON or optic neuritis is another symptom that just about guarantees the MS dX too.
 
Write as much as you like.. I am on my computer all day long.
 
What ages are your children? I have 3 ..but grown with 7 grandchildren.
 
Take care..talk soon
 
Jan
I believe in MIRACLES ~!
 
DX: 02/10 MS and Epillepsy
DX: 10/09 Gitelmans disorder, a rare kidney disease
DX: 02/09 Dysautonomia and SICCA syndrome


mom2two
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/20/2010 7:30 PM (GMT -6)   
Jan,

The pain varies and I dont take anything anymore except for ibuprofen, excedrin, and amitriptyline. I have widespread pain, like back pain, but the worst pain is the ribcage. They told me it was costochondritis. That pain definately varies and I can go with periods where I dont have it, but then, usually during the night I wake up and it hurts so bad that I have a hard time breathing. It feels like a terrible ache on the left side. I roll over and try to catch my breath. Then it becomes a squeezing pain like a snake wrapping around me. That started about 15 years ago. Fibro was diagnosed by my family doctor because of widespread pain that didnt show an actual illness on any scan or test I have had. I have learned to deal with the pain. Mainly because I thought I had cancer, and found out I don't. They thought I had lupus, and I don't. Most troubling is the cognition problems. My memory has gotten so bad that sometimes I forget how to get home or how to get to work. I rely on my GPS to get around the town I have lived in all my life. My speech is jumbled, words get combined into one word, and my speech is slurred. The cheek pain I have had only twice, thank the lord, because I had hoped that I would die. That doctor told me it was a sinus infection. HA!

I am sorry that you have been through all you have. It sounds like it has been a long road for you and hopefully the specialist will help you!

I have two children, 10 and 11:) My hope is to someday have enough energy again to get off the couch and be a good mom!
mom2two


Jan4you
New Member


Date Joined Apr 2010
Total Posts : 19
   Posted 5/20/2010 9:44 PM (GMT -6)   
Oh dear.. I am so glad I no longer have to take care of children and a husband with all this.
 
Costrochondritis is terrible..and one of my worst symptoms..but.. with Ibruprofin and Methocarbamol 750mg which is a less drowsy muscle relaxant.. AND.. I use a lumbar wrap around back brace around my rib cage..and THAT helps alot. Yes just rolling over is horrible..laying on my side can start it up.. or just doing nothing. I have gotten used to telling my body to go easy..be easy.. as I breathe real slow. BUt you know sometimes it just takes your breath away yes?
My ortho doc said sometimes they use oral steroids if its too bad.
 
I used to take Provigil when my fatigue was soo bad I could no longer hold my head up at work. ANd it really helped..then.. I went to this amazing nutritionist who has specialized training in evaluating what you may be toxic from..or deficient in.. and make up a nutritional program or including a gentle detox (often for heavy metals like mercury) and whalla..I could sit up.. hold up my head and a lot of my symptoms improved or left.
 
I know about the cog stuff and the speech.. my biggest problem then. BUT his program improved my balance and cognition/speech. I just cannot afford him now and pay these medical bills.
 
You know there is another MS forum.. with many more folks on it than this one
Its called MSWORLD. Look it up. I am MJAN there ok?
 
THey are very very helpful..and have a posting section for those in "limbo" waiting for some kind of diagnosis.
 
WRite any time ok?
 
Jan
 
 
I believe in MIRACLES ~!
 
DX: 02/10 MS and Epillepsy
DX: 10/09 Gitelmans disorder, a rare kidney disease
DX: 02/09 Dysautonomia and SICCA syndrome


mom2two
New Member


Date Joined May 2010
Total Posts : 4
   Posted 5/21/2010 7:05 AM (GMT -6)   
Jan,

Thanks so much!! I am going to check out the forum you suggested. I'm off to work--and soon calling to make an appointment withan MS neurologist. I love Fridays, because I know I have a weekend to rest, at least when Im not working one. A very early retirement would sure help lol!! I'm 40 now. I remember vaguely a time before this all started. Life was pleasant. But I feel like maybe there is some hope yet!

Talk to you soon and take care.
mom2two


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3529
   Posted 5/21/2010 4:58 PM (GMT -6)   
Mom2two,
 
You have gotten excellent advice and attention from Jan.  You definitely need to see a neurologist and hopefully an MS specialist.  Don't worry about seeing an MS specialist without any sort of diagnosis.  They can send you in another direction if they feel it isn't MS. 
 
Jan!
 
Have you considered being a moderator on this board?  Your willingness to respond to inquiries is wonderful!  This board is currently without a moderator and could use someone that is available.  Do consider it! 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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